Because it’s one of those days, I decided that I should go ahead and force myself out of bed and to school.
Because it’s one of those days, I left school early to get coffee and sushi.
Because it’s one of those days, I had forgotten to tell Simon’s teacher that I’d be picking him up early, and so I texted her and warned her.
Because it’s one of those days, Simon (who didn’t know he had a doctor’s appointment) had been telling his teacher that Mom was picking him up to take him to the rodeo.
Because it’s one of those days, I picked up Simon to take him to the doctor for his yearly check-up and his physical for Special Olympics, and he wanted his teacher to see Mom’s black car.
Because it’s one of those days, at the nurse part of the visit, I found out he is only two inches shorter and fifteen pounds lighter than me.
Because it’s one of those days, I didn’t realize that I was jinxing myself when I said, “Wow, he’s never done that before” when he let the nurse take his temperature orally.
Because it’s one of those days, it wasn’t until we went into the room to wait for the doctor that I realized the crotch of his pants had split and his blue underwear was showing through.
Because it’s one of those days, I didn’t have to feel like a bad mother for not noticing his pants had split because it was time for Simon to get changed into a gown.
Because it’s one of the days, the wait for the doctor had been going on for seemingly forever when Simon announced, “I have to go to the bathroom.”
Because it’s one of those days, a second after Simon made the announcement, he began peeing…on the floor…through his underpants and the gown.
Because it’s one of those days, there was a lot of pee. A lot of it. Like the whole floor was covered in it.
Because it’s one of those days, even though I told him to stop peeing, he kept peeing. And peeing. And peeing. And peeing.
Because it’s one of those days, I quickly pulled off his soaked socks, threw some paper towels on the floor, and dragged him to the bathroom to finish peeing (assuming there was any left in him).
Because it’s one of those days, the doctor walked in as I was trying to toss paper towels all over the huge puddle of pee, and I had to warn her not to come into the room very far because in about two steps, she would have slipped and fallen, and that might have been a bad way to start the visit.
Because it’s one of those days, I had to repeatedly explain to the doctor that no, this wasn’t normal behavior, he doesn’t pee on floors everywhere we go, and, honestly, he is pretty well potty trained.
Because it’s one of those days, I had Simon show off by saying dog in four languages (well, five if you include English) to the doctor since I kind of felt I had to prove that he doesn’t just go around peeing on the floors.
Because it’s one of those days, after the doctor left the room to fill out his Special Olympics paperwork and he needed to put his clothes back on, it was full-on meltdown time because he did not, I repeat, did NOT want to go home without underwear.
Because it’s one of those days, it took me a minute to realize that he had to wear his pants WITH THE HOLE IN THE CROTCH without any underwear.
Because it’s one of those days, the whole of pediatrics got to listen to Simon scream, at the top of his lung capacity, that he wanted fresh underwear.
Because it’s one of those days, I considered taking him to Target and just buying some new underwear for him, but then I realized that would mean walking through Target with him in ripped pants and his balls hanging out (literally) while he screamed that he wanted fresh underwear.
Because it’s one of those days, I decided against taking him to Target because we would probably wind up being arrested for public indecency, and I convinced him that we could go straight home and then he would have fresh underwear.
Because it’s one of those days, since we’ve gotten home, I’ve had a hot bubble bath and some Ben & Jerry’s ice cream.
Because it’s one of those days, don’t you judge me.
Because I have news for you. And it’s bad.
Last week, there was another tragedy in the special needs world.
He had left for school that morning, riding the bus.
He never made it to school.
His mother never heard that, though, and when he didn’t get home at his usual time, she called, only to be told he had been absent.
By the time she got through to the bus barn and had people looking, it was too late.
They found her son on the bus, dead.
At this point, there is no cause of death, and while the driver had been questioned, there are still no answers as to what happened.
This matters so much.
Simon is only partially verbal. I never know how to describe his ability. He can speak, but his speech is limited. He can often tell you when he wants or needs something, but there is really no true conversation happening most of the time, and I don’t know that he’s always saying what he thinks and feels, as opposed to just sharing lines from TV shows or movies.
Would Simon speak up if someone left him on a school bus?
But would he know what to do if someone left him on the bus while he was asleep? Would he get off the bus when he woke up? Would he go look for help?
I don’t know.
I don’t know if I could teach him to do it, either.
Because of that communication gap, I can’t tell you what he would do. I can’t tell you how he thinks or what he thinks. I know that he thinks – he makes all sorts of connections, and he learns quite quickly – but I can’t understand his methods of thinking and making connections.
And that’s scary when news like this comes up, quickly flashes across the screen, and then is immediately forgotten about.
Where is the outrage? Where are the updates? Why aren’t other parents getting up in arms?
Well, probably because they’re tired.
Parents of special needs kids have worries like this all the time. They have to be on their guard, they have to be ready to jump up and fight the good fight, they have to worry. And that can really wear you down after a while. It’s hard to fight for other kids when you have your own kids to worry about.
Times like this, though, require that we get together, that we share the news, that we reach out to each other. We need to know it happens, we need to learn from it when it happens, and we need to see what we can do to stop it from happening ever again.
This means I need you, wonder-people who bother reading my blog. You need to talk to your kids, your friends, your neighbors, anyone you happen to encounter during your school journey. Make friends with your child’s bus drivers, teachers, admins. Do everything you can to spread the word about the tragedy and to use it as a lesson, to never let it happen again.
I don’t want to, and don’t mean to, take away from the tragedy that happened in Lake Jackson on the 5th. A five year old girl was hit and killed by a truck. It was a freak accident. The girl was walking behind her father. She stopped and got down to look in a storm drain. She was too low to be seen by the driver.
I cannot image the pain that goes with having your child die. Especially in such a sudden way. Especially in a way that can lead to you blaming yourself.
Think about it: you turn your back for half a minute. You miss seeing that your child has gotten down on the ground. You don’t see that your child is in danger. It takes almost no time at all.
You will potentially feel that guilt for the rest of your life, I would imagine. I could only think that it’s nearly impossible to erase the feeling. Even though it isn’t your fault, even though it was just a momentary lapse – one that every parent has every day, multiple times, probably – it is the one lapse that will never go away. Never be forgotten.
This is a fear of so many parents and caregivers of those who love someone with autism.
It’s a real fear, a daily fear, a constant fear. A terrifying aspect of autism.
Children, and adults, can decide to run for no reason or for some unknown reason.
Simon is afraid of birds. Hearing birds, seeing birds, sensing birds…that can set him off. We have a handicapped tag to make sure that, on days that when the birds are converging, we can park close by and don’t have to worry about him making a break for it across the parking lot.
But not everyone can do that.
And not everyone can hold onto the person that wants to run. Or keep an eye on them 24/7. There are lapses. There are moments. And they are the scariest parts of the day.
Yesterday, Simon hit a limit. It wasn’t something that would bother most people.
Yesterday, Simon had to wait to go out to dinner. He’s bad at waiting. Very, very bad at waiting.
Yesterday, Simon melted down. He melted down hard.
He hit a point of no return, and he couldn’t stop himself. None of the usual things worked; he would not be distracted, he would not calm down.
Instead, he lashed out. At Patrick.
He attacked him as hard as he could attack.
He scratched. He pinched. He dug in his nails.
Patrick tried to restrain him, but each time he released Simon’s hands, Simon went for him.
Simon seemed to relax a little, said he wanted a big hug.
Went in for a hug, changed his mind half-way and began pinching Patrick’s stomach and sides.
Patrick tried to get out of the way, multiple times.
It didn’t work.
Finally, Patrick was able to sit and lean back far enough that Simon couldn’t reach him.
I got in the way, Patrick got out of the room, and since Simon has never scratched or pinched me, I hoped it would work out okay.
I turned out all the lights, got him to calm a bit, sat down and wrote out sentences about what was going on and what was happening.
After we’d finished a full page of sentences, he had calmed down to just crying.
Patrick had gouges up and down his arms. Slices in his skin, bleeding. The worst ones were on his hands where there were flaps of skin.
When Patrick came back into the living room, Simon was calm enough to apologize.
Simon was calm enough to go to the bathroom, to put on his flip-flops, to go to the car, to go to the restaurant.
Simon was calm enough to eat. To drink his orange juice. To come back home. To go to bed.
And everything was normal again. Like it never happened.
Except, of course, it did. And it might happen again.
When we were on vacation in Alabama last month, I found a little yellow fish in the sand. I think it’s a fishing lure, but I have no idea because I don’t fish. All I knew was that it was cute, and it said “Shakespeare” on it.
Deciding this was a sign from the gods of the beach that I should be writing, I brought it inside.
Simon immediately stole it away to keep in his room.
Okay, that’s cool. I let him have it because I knew that once it came time to go home, I could take it back and keep it on my desk. Chances were, he’d forget about it once he had access to all his little toys.
We got home. I put it on my desk. It stayed there for a good two weeks.
Then, the other day, I’m walking through the living room, and I see it sitting on the coffee table.
“Where did this come from?” I ask Simon.
He looks at me like I’m an idiot (which happens more often than I’d like to admit.)
“The table,” he tells me. Because, duh, it’s on the table.
“No, before the table, where was it?”
He stares at me some more. Again, I’m being an idiot.
“On the paper.”
Yes, yes, he’s right, to be exact, it was on the pad of paper before I picked it up.
“Before that,” I say.
And he just stares.
“Was it on mom’s desk?”
“It was on the table.”
Apparently, I was just too dense to get it. It didn’t matter that it was once on mom’s desk. It had been claimed by Simon, and it was his. The only thing that mattered now was that it was on the table with his stuff. His. Not mine.
I finally got it, put the fish back down on the pad of paper, and walked away.
I don’t think I’m going to get Shakespeare back anytime soon.
School started on Monday!
Simon has been happy to be back on a schedule, and every day, he comes home and tells me that he’s going back to school, and I remind him that he won’t go back until the next morning.
Monday was good.
Tuesday was good.
Wednesday. Well. Wednesday was.
He got home, and everything seemed to be running smoothly, but then for no reason I could tell, something changed, and he began getting upset. He wanted dad home. He wanted dad home now, and nothing I could say would make it better.
Okay, I thought. Let’s try to go for distraction. (Seriously, sometimes I think that distraction is my best friend, although when it comes to ADHD, it’s my worst enemy.)
“Do you want to go run errands?” I asked him.
Oh, yeah, he was all in.
We went to the thrift store across the way.
And he was not all in. Not even close to partway in. He didn’t even have a toe dipped in there.
Instead, as we walked into the store, he began demanding dad. Loudly. Repeatedly.
He got more upset the longer we were there. I tried to get him to hold off, asked him if he still wanted to go anywhere else, told him that dad would be home when we got home. No dice.
He screamed more. He cried, tears streaming down his face.
Time to leave.
We got to the counter.
We had to wait.
Simon really, really, really did not want to wait.
He escalated in decibels, and he added in this little shrieking thing he does.
Now, I’m going to go back a bit.
When we were on vacation, I managed to pick up a cold. It didn’t really hit until the last day, but since it has hit, I’ve been congested and coughing, and I’ve had a sinus headache every day. It normally starts out hurting, and by about lunch time, it has gotten worse, and by dinner time, it’s turned into a migraine. What I’m trying to say is that the noise was bad for the people in the store, but I’m going to say it was slightly worse for me. I couldn’t go to another area of the store and ignore it, and I couldn’t stop it.
I tried to calm him down, like I had been doing. I gave him pressure and hugs, I rubbed his back, and I told him he was doing good at calming down (even though he wasn’t – but for some reason, telling him that he is doing it seems to make him do it sometimes).
He began slamming his hands down on the counter, shrieking.
I pulled his hands back, told him not to do it, and listened to him getting louder.
I considered leaving, but I had two things I really wanted, and I was seconds away from getting rung up.
No one said anything to me, but when I looked around, I saw the stares. Shockingly, people were not enjoying his meltdown. I had to balance what I wanted versus if I thought I was driving other people insane. It was a public place, I reasoned. And if I can’t get him used to going to public places and stopping a meltdown, then what will happen when I *have* to go somewhere and he’s having a meltdown?
I was going to try to wait it out.
I managed to pay with him only breaking free once more from a hug to slam his hands down on the counter. Then we were outta there.
I sent out a quick tweet, which showed up on my FB page, and I got a “sorry” and a frowny face.
I wanted to explain my tweet. And any of my other tweets when I say Simon is having a bad day or a meltdown or whatever else is going on that he (and I) aren’t enjoying.
I don’t mean the tweets to get replies of sympathy. I don’t want people to apologize for Simon – and me – having a bad day.
I’m really just trying to get out there and say, “Hey, this happens. Next time you’re at the store, don’t stare, even if you want to. Next time you’re at the store, realize that you aren’t enjoying the yelling, but neither is the kid – or adult – doing it. Neither is/are the parent/parents who are trying to help the person having the meltdown. Next time you’re at the store, have some empathy, not just sympathy. Next time you’re at the store, be aware why the other person is there, and why you might have to put up with something you find unpleasant. And, next time you’re at the store, if you hear/see this happening, why not run over to the person with a Starbucks gift card…”